Newsletter #5

George Pantziarka TP53 Trust - Newsletter

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LFS Awareness Day

The George Pantziarka TP53 Trust was once again happy to mark LFS Awareness Day by wearing blue on March 20th.

Take a look at Trust Ambassador Patricia Walsh's outfit this year - doesn't she look great!

For more info on LFS Awareness Day head over to our website by clicking here.

LFS Register for the UK

We do not know how many people with Li Fraumeni Syndrome (LFS) there are in the UK.

However, as of July 25th 2023, we do know that there are 9,030 people in the UK with Lynch Syndrome, another cancer predisposition syndrome like LFS. Not only do we know how many, we know what sex they are, where they live and what gene variants they have. And if we wanted to know those numbers for today, we'd be able to get them fairly easily.

How is that we can know these things about Lynch and not LFS? All of this is down to the English National Lynch Syndrome Registry (ENLSR) - a fantastic resource for people with Lynch, for the doctors that treat them, for surveillance and for scientists looking into the syndrome. What's more every time someone is diagnosed with Lynch syndrome they are added to the registry. This is information not just for the sake of knowing, but it links to the management of Lynch and the testing that each person needs - it's a clinical tool not just a database.

And it's what we desperately need for LFS too. At the moment we only have a rough idea of how many people in the UK have LFS, and an even rougher idea of where they are and how they are managed. This is how it's been for too long, and it's about time that this changed.

Harnessing research and practice for patient benefit in LFS

If you are a health care professional or academic working on Li Fraumeni Syndrome or a related area this is for you!

In collaboration with Oxford Cancer, the George Pantziarka TP53 Trust and Li Fraumeni Network for Clinicians and Researchers (LiNCR) will be hosting a one-day face-to-face conference in Oxford on May 23rd 2024.

The aim is to bring together researchers and clinicians, from across the UK, who are working on LFS-related projects or service delivery. We aim to encourage collaboration and the sharing of results to benefit people with LFS, a community that continues to face very high unmet needs..

The last few years have seen a significant increase in UK research activity that is directly relevant to people with Li Fraumeni Syndrome (LFS). There is now real momentum in both the number and range of projects and studies that involve imaging, liquid biopsies, tissue sampling and so on..

In parallel there have also been improvements in health services delivery to people with LFS, particularly with respect to the provision of annual whole-body MRI, although access issues remain a significant problem for many.

As representatives of the LFS community, the George Pantziarka TP53 Trust has created an informal network of researchers and clinicians working in this area. The aim of LiNCR (pronounced linker), is to provide a forum for the exchange of information, sharing of ideas, increasing cooperation, and supporting and encouraging further research.

It will also facilitate the further involvement of the LFS community in research, including support for grant applications, production of PPI materials, recruitment for studies and other forms of direct patient engagement.

We're pleased to confirm that LFS UK 2024 will be held on Saturday 14 September at a brand new venue.

This year we'll be setting up shop at ISH (International Student House).

It's a great venue, near to several underground and overground stations and directly opposite Regent's Park, for anyone who fancies a stroll. The rooms are bright with natural light, the catering looks good and there's a bar for those of us who'd like to hang around for a drink and a chat afterwards.

We're also excited to reveal a sneak preview of this year's programme:

  • Updates on MILI and LiFTS
  • Interesting data from Mette Jorgenson's childrens' LFS clinic at from Great Ormond Street Hospital
  • PhD student research poster presentations
  • Plus our usual Voices of LFS presentations where we hear from individuals with LFS or their family members

Tickets are free, but please do book using the button below. Plus look out for the full programme in the next newsletter!

Meet the Trustees

In this section we'll get to know one of our trustees a little better - this time we're speaking to Gillian Winskell.

How did you get involved at the Trust?

I became a trustee when Natasha asked me, knowing I have an interest in all things scientific

What does your role at the Trust entail?

My main involvement is taking and writing up the minutes of the trustees (approximately) monthly meetings. Some of the technical terms, acronyms and names definitely challenge my spelling ability!

What do you enjoy most about working with the Trust?

Being a trustee has broadened my biological and medical knowledge. I particularly enjoy the annual conference and meeting and learning from the speakers and attendees.

What is your greatest accomplishment?

I have knitted many hats and blankets for premature babies. Not exactly world changing I know, but something to be proud of!

What do you do in your spare time?

In my spare time I enjoy swimming, baking and knitting; it’s a pity I can’t do them all at the same time!

What are you reading at the moment?

At the moment I am reading Daniel Deronda by George Eliot and Lessons by Ian McEwan, very different but absorbing reads.

For The Love of George

If you'd like to learn more about the story behind the George Pantziarka TP53 Trust, you can purchase the For the Love of George on Amazon - currently on special offer!

For the Love of George tells the story of George's life and sets the scene for the creation of the Trust.

Just click the link below to view it on Amazon.

All proceeds from sales will go to the George Pantziarka TP53 Trust.

The trust survives thanks to your ongoing support - we couldn't do it without you.

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George Pantziarka TP53 Trust
Registered Charity Number 1157167

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